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#MEAction

@meactnet

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#MEAction an international network of ppl empowering each other to fight for health equity for myalgic encephalomyelitis (ME) #MillionsMissing
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In honor of Severe ME Day, #MEAction is honored to share the Severe ME Artists Project 2026! LINK IN BIO! Over 100 of you submitted photos, drawings, writing, and videos of your work for our 6th Severe ME Artists Project! We are thrilled to share so many amazing and powerful pieces of artwork. MEAction recognizes the difficulty of living with severe ME and hopes that on Severe ME Day and every day, you feel loved and supported. This project was created with an idea to allow those with severe ME to share their artwork with the larger community and provide an opportunity to be SEEN! We also want to acknowledge the grief that happens around art for those unable to practice their art now due to illness and those who have had to change the way they practice their art. We are holding space for you and keep you at the center of all we do at #MEAction all year long. We have two viewing options: - The Severe ME Artists Project Gallery on our site. You can view all the artwork including the written pieces here. Scroll through as able and take your time. This is the most sensory friendly option. There are videos with sound but you can mute if needed. - A video compilation featuring all of the art submitted. There is sound used in this video, so please mute if sound sensitive. It has captions where needed. Thank you so much to everyone who participated in this project! On Severe ME Day and every other day, please know that you are not alone. MEAction’s community is here for you. We are here to support you and we are in this fight for you. NOTE TO ARTISTS: Feel free to tag yourself in the comments and share any sites you have. Everyone check the comments if you want to follow the artists. If you are also sharing your piece (past or present) give us a tag and we can try to share. #pwME #SevereMEday #SevereME #MyalgicEncephalomyelitis #artist #DisabledArtist #MECFS #SpoonieArt #UnitedForME Alt text embedded. Empty bench in front of a frame (like you would find at an art gallery)/ Framed sign has text: Severe ME Artists Project 2026. Under the frame is a QR code and website link bit.ly/SMEart2026, by @meactnet
27
2 months ago
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August is Severe ME Awareness Month. Each year during this month, I swear I am broken and re-formed by what I read and see and experience from you all. You are beautiful and vulnerable and bold. I am beyond honored to be in community with you. I want to make sure we begin this month by amplifying the voices of those with Severe ME- the ones with lived experience. I started sharing today and here on Instagram I will be gathering stories in a highlight. See in our bio. Tomorrow, I have a scheduled share that reminds us to take care during what can be a tough month. I wish I could give you the gentlest of hugs or come sit in those darkened rooms with you and it would not hurt you. I know how hard just the energy of another human in your space can be. I often picture so many in our community quietly waiting outside the doors of those who cannot let us in right now- far enough away that we in no way harm you but just enough so that you feel less alone. And know we are furiously working to improve this world and bring you back into it. Because that is the truth of it in our special online world. I truly hope the universe allows you to feel so much love coming your way. I see your power, your strength, your creativity, your humanity - and I wish you did not have to be so damn strong. If I could ease something in your life, I would. But for now, I will share your stories. I hope you can be seen. And that the visibility brings CHANGE. You deserve understanding, care, treatment, and a cure. So those who are able to share, please do. For those wanting to help amplify the stories of those with severe ME, watch for our reshares, add to stories, reposts etc as able. You can use hashtags #SevereME #SevereMEday #SevereMEAwarenessMonth. Feel free to tag us @meactnet. I will do my best to share what I can! We launch our 6th Severe ME Artists Project on the 8th and we join our fellow #UnitedForME orgs on Aug 12th. More about those soon. But before anything, we amplify your lived experience. A personal note from Holly- Community Engagement and Social Media Manager #pwME #MyalgicEncephalomyelitis Alt text embedded. Simple torn paper background with text: "Severe ME Awareness Month 2026" and a red heart above. #MEaction logo below. by @meactnet
4
2 months ago
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This #MillionsMissing, we are Frail and Furious! This May, we will come together to show the world how devastating this disease is. Join us: millionsmissing.org Link also in our bio! Government and healthcare systems around the world fail to understand myalgic encephalomyelitis (ME) as a serious, complex medical condition, leading to significant neglect in medical care and social services. Diagnoses are often delayed for years, disability qualifications are complicated, and our health care is at risk. Over and over again, people with ME and Long COVID are asked to prove their medical frailty - how sick we really are. We ask you to share your story about what it’s like to live with this serious, complex medical condition in order to get the recognition we need and deserve. Injustices are happening worldwide because ME is not taken with the seriousness we deserve. It’s why we are asking you to amplify the medical frailty of ME. We are frail and furious and we need you to join this fight! #FrailAndFurious #pwME #MyalgicEncephalomyelitis #MECFS #LongCovid #UnitedForME #WorldMEDay Image description: New Frail and Furious logo plus the MEAction logo on red slightly swirled background. "Frail and Furious" is shown on a swath of white paint. Underneath is the text "#MillionsMissing" but the second I is the outline of a person. MEAction logo is a circle with the text #MEAction in the circle. New Frail and Furious logo plus the MEAction logo on red slightly swirled background. "Frail and Furious" is shown on a swath of white paint. Underneath is the text "#MillionsMissing" but the second I is the outline of a person. MEAction logo is a circle with the text #MEAction in the circle. by @meactnet
8
6 months ago
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Halloween is on a Saturday, but if you are too old to trick-out on some treats, or do not have the spoons to par-tay in person... here is an All Hallows Eve alternative. I will be doing a dramatic reading of H. G. Wells, The Invisible Man, on my twitch channel. What makes it dramatic? Well, you will have to come by to find out. Mwhaahha ha! Now, that is a tease. October 30th, 7 P.M. PST twitch.tv/corywysz I.D. - A flyer of a person's clothes, and bowler hat, floating as if someone is invisible, standing in front of a warped picture frame. Text reads, "H.G. Wells, The Invisible Man, As read by @CoRyWys, twitch.tv/corywysz, Starts Oct. 30, 7 P.M. PST" #lostartofphotoalchemy #zebralife #twitchaffìliate #halloween #chronicillnessiswar taken in Los Angeles, California by @meactnet
4
13 hours ago
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SAVE THE DATES! Please note the title of webinar and date are switched in the graphic. The dates and title are correct IN THE POST. (Doing too many things at one time- sorry!) November is National Family Caregivers Month and we are thrilled to bring you two new webinars focusing on caregiving from our amazing volunteers Denise Lopez- Majano and Kim Moy. "Things We Caregivers Wish We Had Known" will be a roundtable discussion facilitated by Denise Lopez-Majano on Sunday, November 1st at 3pm ET. “Being on the Same Team: Strengthening Relationships Through Chronic Illness” with Kim Moy of @CaregiverWisdom on Sunday November 15th at 3 pm ET. This conversation is for both people living with ME/CFS, Long COVID, and related illnesses and the people who care for them. We will be sharing the registration soon, so stay tuned! #Caregiver #PwME #ChronicIllness #FamilyCaregiver Two free caregiving webinars on November 1 and 15 at 3 PM ET for National Family Caregivers Month. Dark brown background with cream accents. Text: November 1st 3 om Et “Being on the Same Team: Strengthening Relationships Through Chronic Illness” with Kim Moy of Caregiver Wisdom. November 15 3 pm Et "Things We Caregivers Wish We Had Known" roundtable discussion facilitated by Denise Lopez-Majano by @meactnet
0
15 hours ago
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We are delighted to bring you this new campaign at the request of our amazing caregiver volunteer Denise Lopez-Majano. Denise is turning 70 and wants to help spread kindness throughout our community - 70 acts of kindness by December 7th! https://www.meaction.net/post/70-acts-of-kindness-by-december-7th If you commit an act of kindness in honor of this campaign, please comment on the article linked so we can help keep count towards the goal of 70. You do NOT have to share what the act of kindness was but you can if you like. Acts of kindness for yourself are very much encouraged and you can do more than one! Denise especially wants the acts of kindness to be accessible to as many as possible. So check out the article for some great ideas for low battery/low energy levels. This campaign grew out of Densie’s true passion for spreading kindness. Her life is a model of radical compassion and she wants to take this milestone birthday to spark a cascade of kindness to bring warmth and joy to the ME community. Denise is involved in advocacy work with the Maryland and Pennsylvania chapters and she facilitates one of MEAction’s monthly support calls for caregivers of people with ME and other associated conditions. We would love to hear your ideas for acts of kindness! Check out the amazing list started in the article. What speaks to you? What can you do for yourself and for others? Let’s get to 70 acts of kindness or more by the time Denise turns 70 on December 7th! #kindness #pwME #MyalgicEncephalomyelitis #MECFS #70by70 Alt text embedded. Yellow poster with blue accents promoting '70 Acts of Kindness' campaign for Denise Lopez-Majano's 70th birthday with a QR code to scan. Text: In honor of her 70th birthday, Denise Lopez-Majano is launching a campaign to encourage more kindness in our community and world in a very accessible way! #70by70 by @meactnet
6
a day ago
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Welcome October! It is officially spooky season! We're excited to bring you a brand new art workshop on October 29th at 12 PM EST. We are going with a Halloween theme! One of our wonderful volunteers, Orion Romero, will host. https://www.meaction.net/event-details/orions-halloween-art-workshop Orion is a person with ME/ CFS and a long time member of our narrative working group. When Orion is not helping us out at MEAction, they are an educator and artist. They have hosted galleries for us during Millions Missing to help share the word about ME/CFS. The project will be an exercise to build figure drawing skills, with a Halloween theme! All you need is a pencil and paper, with enough paper for a few sketches. Please don't forget to register for this event. There is no deadline to register. #pwME #art #spoonie #MECFS #Spooky #ChronicIllness Alt text embedded. Poster for Orion's Halloween Art Workshop on October 29 at 12 PM ET, held virtually. Spooky graphics like a spider web, bat, and eerie tree. #MEaction logo at the bottom. by @meactnet
0
2 days ago
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MEAction’s Partner Caregiver Support Call led by Kim Moy of @CaregiverWisdom is coming up this Sunday, October 4th at 12 pm PDT / 3 pm EDT / 8 pm BST. To join, email kim@caregiverwisdom.net. We have a first for you as longtime community member and caregiver Charley Kakel will lead our conversation focusing on Micro-Acts of Joy—the simple everyday moments that can nourish and sustain us amid the stresses and uncertainties of caregiving. Charley’s wife lives with severe ME and if that name sounds familiar perhaps you read his writing, PenPals, that he shared in honor of #MillionsMissing this year. https://www.meaction.net/penpals Our Partner Caregiver Support Call focuses on partner caregiving of loved ones with ME/CFS, Long COVID, and related illnesses, but all caregivers are warmly welcome. We also have a monthly Caregiver call on the 3rd Saturday of each month. All caregivers are welcome at both. #pwME #Caregiver #carer #Support #MECFS #LongCovid #ChronicIllness Alt text embedded. Graphic of woman on a couch participating in a virtual caregiver support call with four diverse people on her laptop screen. Text at top: #MEAction Partner Caregiver Support Call. Text at bottom: First Sunday of every month at 12 pm PT/ # pm ET. Logos for MEAction and Caregiver Wisdom in bottom corners. "All caregivers welcome!" is on a banner in top left. by @meactnet
0
2 days ago
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Dealing with Uncertainty and Chronic Illness -A Workshop with Marisa Renee Lee is now available to watch! L I N K IN B I O. We had such a meaningful and powerful time coming together as a community. We invite you to watch this video with respect for those who shared their experiences. Huge thanks to @marisareneelee leading this workshop! Lee is the author or two amazing books: Grief is Love and Waiting for Dawn. We interviewed her about those releases. She also led a workshop focused on grief and chronic illness for us. All can be found on our YT. More information about her most recent book, Waiting for Dawn: "Through rich, revelatory prose, Lee assists you in navigating life's unstable and overwhelming moments. Using research and her personal experiences, Marisa argues that self-preservation is necessary when life is at its worst. If you are experiencing pain, chronic stress, or loneliness or are burdened with self-doubt, Waiting for Dawn brings you from a place of instability to hope. Lee shares her two-year journey battling loss and illness the death of her mother-in-law, ongoing sickness, and the emotional challenges she endured that taught her that healing is about finding your own unique way through the darkness." Lee has a retreat coming up November 13 - 15, 2026 for those suffering with loss, grief, and uncertainty. Find out more about all of this at her website marisa renee lee dot com #pwME #MECFS #LongCovid #MyalgicEncephalomyelitis #ChronicIllness #Grief #uncertainty alt text embedded. Portrait of Marisa Renee Lee smiling with information on her workshop video on managing uncertainty and chronic illness. Photo: Black woman with long hair wearing a deep purple top and smiling. On each side of that photo is a picture of one of her books: Waiting for Dawn and Grief is Love. Text above: Dealing with Uncertainty and Chronic Illness- A workshop with Marisa Renee lee. Video now available! by @meactnet
2
3 days ago
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MEpedia is going strong-- we just received notice that MEpedia reached 20,000 clicks from Google search in the past 28 days alone! Your support helps important knowledge get in the right hands. Check us out at www.me-pedia.org! #pwME #MEpedia #MECFS Gold badge showing 20K clicks from Google Search for me-pedia.org in the last 28 days. by @meactnet
2
4 days ago
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It is #MedicaidMonday and we are back with Frail and Furious campaign* updates. We have been busy and we want to make sure we share the wins along the way! Full info - L I N K in B I O . In the past weeks, MEAction advocates have been making real progress across the country. Medicaid leaders in Pennsylvania and North Carolina have confirmed that ME/CFS, Long COVID, MCAS, POTS, and hEDS are on their lists of conditions that may qualify for the medical frailty exemption—and Pennsylvania has included ME/CFS as a Tier 1 condition, meaning an ME/CFS diagnosis alone can establish eligibility. We’ve also connected with state health officials in California, Wisconsin, and Colorado, while pursuing connections in Alaska and Nevada. Four advocates have shared their lived experiences directly with Medicaid leaders, and advocates have participated in stakeholder meetings and webinars in six states, bringing the voices and needs of people with ME/CFS and Long COVID into the rooms where these decisions are being made. Our advocacy has opened new doors to advance recognition of ME/CFS, Long COVID, and other IACCs within state public health leadership. A huge thank you to the advocates showing up! Want to get involved? See article for full details and L I N K S. - Do you have contacts at your state’s Department of Health? We are looking for warm contacts in many states so we can reach the right decision makers. Send tips to advocacy@meaction.net. - Want to advocate for Medicaid access at your state’s stakeholder meetings? States are holding meetings and webinars about work requirement implementation this fall. - Come to your state chapter’s meeting! Are you in a state without a chapter but want to get involved? Email advocacy@meaction.net. * New to this campaign? MEAction is leading the #FrailAndFurious campaign to protect Medicaid access for people with ME/CFS, Long COVID, and other infection-associated chronic conditions (IACCs). #pwME #Medicaid #MECFS #LongCovid #IACCs #POTS #MCAS #hEDS #disability Alt text embedded. Info from post on simple graphic. Infographic showing ME/CFS and Long COVID medical frailty exemption progress in PA, NC, CA, WI, CO, Alaska, Nevada. White background with frail & Furious campaign and MEAction logos at top. Each update is listed in a text box. Outlines of states to the side. by @meactnet
2
4 days ago
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Have you checked out all the amazing things Pillow Writers has going on lately? I could barely fit one month on a graphic! The best place to learn about each option is their site pillowwriters . wordpress .com. For those going- wait what or who is @pillowWriters? Glad you asked! Pillow Writers shares they are "an international ME/CFS writing community. Pillow Meetings are free and open to anyone with ME/CFS or Long Covid. Attendance is on an ad hoc basis. Our community supports a wide range of writing with different groups catering to a variety of interests." MEAction was so excited to partner with longtime ME advocate and mother of a pwME, Bobbi Ausubel, to host a writing group for people with ME and Long COVID, Pillow Writers. And oh has it has grown! They have two books out from the original Pillow Writers and one newly out from the daughter group WIMEL (what is myalgic encephalomyelitis like?) @wimelwriters. Those are all available & help support our work. The original Pillow Writers group has added many variations including a Pillow Crafters and a Spanish language group. And how beautiful is what they are doing with Softest Pillows??? - We are missing some of our friends with Severe ME and would like to set aside a few minutes once a month to just say a very soft, very quiet, very slow but cheery “Hello!” Please check it out and join in when or where able! Sending all our love to all who have kept Pillow Writers growing all these years! You are truly awe-inspiring! #pwME #PwLC #WritingGroup #MECFS #PillowWriters Alt text embedded. Brief image description: All Pillow meetings of different types on different days in October on cream background with fall leaves as accents. Calendar listing October events for Pillow Writers with dates and times in GMT and PST, featuring sessions like Early Pillows, Standard Pillows, Pillow Crafters, WIMEL, and Softest Pillows. On cream background with fall leaves at the top. by @meactnet
6
8 days ago
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